February 27, 2011 A Different Point of View

Last Thursday, Julia and I attended a Leukemia Lymphoma Society (LLS) dinner which included two speakers. The first speaker was Dr. Rafael Fonseca, who heads up the Multiple Myeloma area at the Mayo. When I was first diagnosed, Julia contacted the Mayo and was told that we could not get in to see Dr. Fonseca very quickly which led us to Dr. Mikhael. I’m certainly not upset about the course of events as we love Dr. Mikhael, but it was interesting to hear another viewpoint.

It seems that Dr. Fonseca does not view stem cell transplantation as the cure-all. It is a tool that is available, but he is more likely to utilize other means of chemotherapy to battle the disease. This seems to be different than was our understanding and certainly different than what we have experienced ourselves. I have four other friends that have Multiple Myeloma and all four have undergone transplantation, one twice.

This just drives home the belief that there is no one way to battle this disease. It is a field that is widening rapidly as the researchers learn more about MM, but it shows that there is no one best way to attack the problem. It also drives home the fact that MM is as different as the people it attacks. Of the four people that I have close contact with, we are all different. One has had it for nearly 10 years. It took forever to diagnose it and he had to continue to bug his doctors to continue to dig until they finally discovered the problem. He has had two transplants and went into complete remission after the transplant.

The second individual did not have very good results with the early chemo but went into complete remission after the transplant, but no longer has kidney function. The third went into remission before the transplant but also has to battle Amyloidosis. The fourth also went into remission before the transplant which he received just three weeks ago.

We are all different but we are all the same. Others utilize a maintenance drug before and after transplant and I have not. It seems there are numerous answers to the problem, but none complete.

The second speaker, Jim Bond, was flown in from Ohio to talk in both Tucson and Phoenix. Jim is a miracle; he has battled MM for 19 years. His original oncologist suggested to him when the cancer was discovered that he quit work and enjoy what little time he had left. Jim and his wife disagreed and started researching the problem on their own. He decided that he wanted to live and not just fade away. Three transplants and numerous medicines later, he still survives.

Survive is probably the wrong word, Jim flourishes. For the last four years, he has participated in a four day bicycle tour that travels the 300+ miles from Cleveland to Cincinnati. Lord, I would get tired driving from Cleveland to Cincinnati and he rides a bicycle. Jim is a true survivor, one that has made sure that he isn’t voted off the island.


Read the Jim "James" Bond story of survival.

When you have an incurable cancer, it is very easy to get discouraged. It is very easy to wonder just how many more birthdays you will see. Yet, when you hear experts explain options and see a 19 year survivor ride a bike for four days it makes the journey just a bit easier. We will know in about a week if my journey has taken a detour or not. I will go in on Thursday for my follow-up blood test after the no so great blood test of last month. If I am lucky and can get someone to send me the results on Friday, I will have a better idea if my cancer GPS is pointing me in the direction or not.

The good thing is that if the results aren’t better, I know I have alternatives. But I have confidence. Just like Joe Namath guaranteed a huge upset before Super Bowl III, I told Dr. Mikhael when we last met that I would have better results. Let’s see if that winning trophy can come my way.

February 9, 2011 My How Time Flies

It was just a couple of weeks ago that I discussed the importance of anniversaries to me. Today probably is the one that means the most to me. It was twenty years ago I took a job without one bit of experience. The fact that the pay rate wasn’t the greatest didn’t really mean much to me. It was something that I wanted to try for years and finally got the opportunity.

Despite my lack of experience, I jumped in with both feet. The work was very hard at times, but it did have its rewards. There were many times that the job took me well past eight hours and early on, I spent a great deal of nights working on probably the biggest project of my life, often going into work the next morning looking like I had been run over with a truck.

I made mistakes along the way, but luckily I wasn’t replaced. Some of the mistakes were probably just looked over because of my lack of experience and others because there just wasn’t any standard operating procedures. Certainly there have been SOPs written in the past for similar jobs, but I’m a stubborn guy and I tend to like to write my own. I’m not afraid to take advice, but in my mind, unless you are doing the job itself, you cannot possibly understand all of the potential consequences.

Despite the poor pay grade, this job has enriched my life more than any other. Just because you cannot look at a huge stock portfolio doesn’t mean that you haven’t been paid well. This has been the job of a lifetime and is worth more than anything money can buy.

You see, today is the 20th anniversary of the birth of my first son, Justin. It was 20 years ago that I became a dad. I may have lacked the proper background on my resume’, but I made up for it with hustle.

Growing up as an only child, I really missed not having a sibling. I really wanted someone that was like me. Many of you are probably happy that they threw away the mold after I was born, but that didn’t keep me from wondering what it would be like to be a big brother. As I got older, I decided that I would change my goal to something more attainable, that of being a dad.

Julia and I reminisced this morning about the morning that Justin was born. It was a cold night and both of us had fallen asleep on the couch. When Julia woke up, she knew that something different was going on. Little did we know just how different our lives were going to be starting in about six hours.

Justin was the joy of my life despite his many flaws. He cried all of the time, including the middle of the night, and spit up on anything that wasn’t moving. To get him to fall asleep at night, I would have to lay on the floor next to him until he would nod off. He started walking way too soon and bashed into everything. If anyone would have seen him on a regular basis, we would have been sent to jail for child abuse. He had more Power Ranger band aids on his face than a UFC fighter.

In reality, those were the easy years. It’s when they get older that you begin to question your decisions and wonder what to do next. Knowing that he should wear a coat out when it is cold is easy. Knowing that he should not be eating sugar is easy. Is a time-out good enough to get the child to understand who is in charge is not easy. Is spanking a capital offense? I’m not sure.

That is just getting you started. Soon they will be in high school and the number of issues that you have to deal with literally explode. Instead of wondering what small present you will get little Suzie for the birthday party at Chuck E . Cheese’s on Saturday, you have to worry if little Suzie is sexting with your son on Saturday. Instead of worrying about your son eating too much candy while at the party, you have to worry if there will be beer at the party.

We used to be able to dress the boys up in whatever we wanted. When they were little, we would dress them in similar, complementary clothes. Now you just hope they don’t kill each other because they happen to have similar clothing on going to the same event.

We used to worry that they would jump off of the swing when it was too high in the air. Then we began to lose sleep on a regular basis because we knew they were out driving at night shortly after they had gotten their license. Now we have to worry about what they are taking in school and if they will be able to get a job when they graduate.

Once you accept the job as parent, it is a job you should never give up. There are too many among us that just walk away from being a parent. Even when it isn’t easy, you need to hang in there. They may not like your advise, but you still need to offer it. Even if they think you are an idiot (I have officially entered that part of my life. Should get out of it when they reach 25.), you need to stay involved. They may not admit that they like it. If fact, they may think that they hate it, but in the end they want it. It is all part of the job of being a teenager.

Having children has brought me more joy than I can ever count. It has left me next to broke, but that is part of the deal. You give them something and they give you something. My boys are never going to win any scholarships, but they are smart kids. They never clean their rooms and you don’t even want to see their bathroom. But I have learned not to worry about them because they are mature kids that have a mind of their own, not that of their friends. They know the difference between right and wrong. They not only know it, they live it. When I recount what they are, I can only smile.

I’m not sure Julia and I deserve a raise when we get our performance appraisal as parents, but I think we will get a passing grade. Did we make mistakes? You bet. But I have to say that somehow the boys ended up as two young men we can be proud of. It has been an experience unlike any other. It is one that I wouldn’t trade for anything. It is a job that I plan on keeping for a while (If they like it or not.)

February 3, 2011 Crap!

When you have a disease of any kind that lasts long enough that you can get results on a regular basis, there are going to be good days and there are going to be bad days.  Since my transplant, I have generally been getting results every two months. For the most part, those results have been pretty good. There have been some bumps in the road, but generally the news has been good when I get a sneak peek before I actually see the doctor.

Because I am terribly anal and very numbers oriented, I have to get my hands on the results as soon as possible. If I have to wait to see the doctor, I go nuts. It’s funny. During the two month period, I really don’t think about it much, but once my blood has been extracted, I want the results. If I could get them while they were taking the five or so test tubes of blood, that would be great. When I was going to Doctor Obenchain, I would have to wait a week and drive poor Jeri crazy as I would ask her each day if the results were in.  Now that I am back at the Mayo, I can get results in a day. Thus, I just have 24 hours of clock watching. 

Yesterday, I made the hour trip up to the Mayo to have the blood draw.  It normally isn’t that bad, but for some reason traffic was bumper to bumper. I really need to get a blow-up doll to put in the passenger seat so I can use the HOV lane. It sits there almost idle since most people drive by themselves.  I understand the purpose, but it sure seems like a huge waste of concrete to me.

I waited as long as I could and finally send Dr. Mikhael a note around noon to try to find out who I could bug to get my results. Luckily he got back to me fairly quickly and it wasn’t long before the results were in my computer.

When I get those results, I look at two things, my kidneys and the level of cancer in the blood stream. The printout was a little different that I had seen in the past and the fax machine at the Mayo was not the best in the world, so everything was a little fuzzy. Not fuzzy enough though.  The kidneys were still in their normal 2.2 range. Not great, but no worse.  The cancer number was not exactly what I was looking for, however.

Because it was fuzzy, I could not see the decimal point.  I had a good idea of where it was, but I was hoping it wasn’t.  So I sent a note back to the Mayo and to my dismay, my eyes were good enough to decipher where the decimal point was.  My new number was 11.5. If this was the percent raise I was getting this year, I would be happy with that 11.5. If it was the number of games that the Reds led the second place team in September, I would also be jumping for joy.. But the fact that this was an indicator of how much cancer was flowing in my veins and the normal scale is 0.57 to 2.63, I was not quite as excited as the raise concept would have been.

To put that 11.5 number in context, my number two months ago was about 5.5. The previous test was a little over 4. The 11.5 is the worst I have had since my transplant. However, because I am now a seasoned veteran at the whole cancer game, I am not about to jump off any bridges. As Dr. Mikhael told me, this number fluctuates, the Mayo tends to be a little higher than other labs, I’ve been almost that high before and the rest of the lab work was pretty normal. With all that in mind, I’m not too concerned.

The next test is the important one.  The next test is always the most important one. It’s like getting to do a do-over every couple of months. It doesn’t matter how good or how bad the last one is, it’s the newest one that is the most important if it confirms a trend. That is my story and I’m sticking to it.

The other reason that I’m not too worried is because I just got done losing a two month battle with the cold of the century. For over six weeks, I fought that sucker.  I eventually won, but not without a struggle. The last time I had a cold, the cancer looked at it like a little vacation from my white blood cells and it jumped a bit. So, I was really expecting a jump. Not this much, but a jump, nonetheless. It seems my body isn’t smart enough to battle two things at a time and the cancer seems to have won that skirmish.

So the bottom line is this. I just had my worst blood results in 19 months, but I’m not too worried about it and you shouldn’t be either. Nobody ever said that this was going to be easy. I just view it as another challenge that I plan to meet head on.  I feel great, so it is not having too much effect on me. That makes my job a lot easier and there is nothing I enjoy more than an easy job!

I plan on starting a regimen of CoQ10 tomorrow.  There has been some research on the value of this naturally occurring supplement and its effect on cancer. The information below was taken from NaturalNews.com:

“Inspired by these results, Japanese researchers at the National Cancer Center Research Institute in Tokyo wondered if CoQ10 could even prevent cancers from beginning and proliferating? They used a deadly carcinogenic chemical, azoxymethane, to induce colon cancer in rats. For one month the animals were fed a defined unsupplemented diet, while another was fed a diet containing CoQ10. The results were remarkable. At the first signs of colon cancer in the rats, they found the cancer was less than half that in the unsupplemented group. This led scientists to conclude, ‘CoQ10 may be an effective chemopreventive agent against colon carcinogenesis.’"

Now I’m not going to compare myself to a rat, but this and other studies lead one to believe that there may be some value. Coincidentally, during the time that I had my two best blood tests I was taking a supplement that we sell at Isagenix called Ageless Actives.  I started taking it because it was a combination of resveritrol, Vitamin D and CoQ10.  There was a clinical study taking place at the time involving resveritrol and Multiple Myeloma and I thought it might do me some good.  However after the four months, Julia noticed that the resveritrol study was stopped because there were some findings that it was causing kidney damage to the participants. As a result, I stopped taking it.

In the end, it might have been the CoQ10 that was helping my results. So, I am going to become my own little lab rat and see what happens. I ran it by Dr. Mikhael and he gave a thumbs up. We see what happens over the next two months.